Please help me find an authoritative neuro/immune explanation for noise sensitivity which will convince my parents to be more careful around me. After 15 years they're still too careless for my sanity and I am too weak on my own to convince them to take me seriously.

Something like this -

"Naviaux stated that because it takes more energy to relax than to react, anxiety, tension and hypersensitivity are likely outcomes of being caught in a low energy state."

Medicine has not even seriously investigated our disease much less understood it.

Severe sensitivity to noise is common for us. Howard bloom wrote about this in his guide to the illness, I believe it's 'CFS for dummies', written years ago when CFS was the only well-known term for it.

Mr. Bloom has written a stack of books...and that's just during his retirement phase.

Not sure about the basis for it, but it is extremely common in ME. Can you maybe see an audiologist and have a hearing test done? I had one done early on and it showed increased acuity to certain frequencies. I also had vertigo, sudden onset tinnitus, and vestibular neuritis at ME onset.

There are a lot of potential causes of hyperacusis, mostly organic involving damage to the auditory nerve or the CNS, but unfortunately also some claimed to be psychosomatic, which seems totally bogus to me. The closest descriptions I've found to the symptoms are tonic tensor tympani syndrome and secondary endolymphatic hydrops, unfortunately neither can be objectively demonstrated as far as I know.

Please help me find an authoritative neuro/immune explanation for noise sensitivity which will convince my parents to be more careful around me. After 15 years they're still too careless for my sanity and I am too weak on my own to convince them to take me seriously.

Something like this -

"Naviaux stated that because it takes more energy to relax than to react, anxiety, tension and hypersensitivity are likely outcomes of being caught in a low energy state."

1) As for validating yourself to anyone, you don't need to. Your life experience is your own.
2) As for proving it, it's currently almost impossible. For example: Is hyperacusis in developmental Autism when a child bites you, more or less real than hyperacusis in ME when a patient wears ear defenders in a dark bedroom?

So I wouldn't bother going down those avenues because you'd need to ingest volumes of journals on neurology and immunology and get nowhere anyway as we don't have enough pathological data from autopsy ME studies looking at brain damage or changes associated to this area.

Even if we did, your own individual brain is immensely complex and so many different parts of it interact, you'd be lost trying to have a tick box to see which part is doing what.

ME involves low grade chronic neuroinflammation and oxidative stress
Many people also have chronic headaches, allergies, infections, innate immune activation, poor sleep.
QEEG brain maps can even show ME brains are emitting seizure like patterns, even when they aren't epileptics.

All of these derangements, combined, will in many people produce an over sensitive, hyper wired brain one of which will mean your sensory input channels will become deranged, and thus the very least you're going to experience is hyperacusis, chronic pain, dizzyness, poor concentration, photophobia, short term memory loss, and so forth.

There are numerous non specific blood and urine markers to test for that affect your brain negatively such as: Elevated D-Lactate, Ammonia, high level of oxidative stress markers and Low Vitamin E, B6, Low Essential Fatty Acids, Low Amino Acids etc which combined if abnormal will hardly help matters and likely contribute further to headaches such as migraines. Add in inflammation/innate immune system markers (probably 20+ of these) and things make a lot of sense why patients have so many neurological issues, but the actual cause remains a mystery, as it does in most diseases. So in conclusion, all we can measure are effects.

Back to what we do understand, or at least accept as 'legitimate', irrespective if you have ME, Cancer, or Bi-polar is unifying illnesses or syndromes that affect so many people, such as headaches associated to input (light) for example and allergies such as (Mast Cells) from trigger foods, chemicals,etc.

Migraines can cause hyperacusis, and paradoxically you don't need to get a headache to have a migraine, or even throw up. Migraines can also cause terrible vertigo and weird seizure like unreal episodes. I have them and sometimes if I am outside (rarely) waiting for an ambulance at the hospital I have to sit with my fingers in my ears because the sound of traffic and people talking is literally unbearable and even wearing a huge pair of headphones won't work.Other times it's not as bad.

Sadly what we experience is the consequence of having a complex, chronic neuro immune illness yet we tend only to have similar not identical experiences as all of our brains are wired individually to be able to cope, not cope, compensate and not compensate with certain stimuli and 'insults'.

If you wanted to guess, the 'cause'? It's something likely associated with how brain neurons astrocytes glial cells all interact. Inflammation, autoimmunity, infection, oxidative stress and your brain feeling like it's on 'fire'- because it is. Not fatal encephalitis brain swelling level that shows up on an MRI which doctors expect to see in a 'inflammatory brain disease', but enough inflammation that your brain cell connectivity nexwork is scrambled, and transiently, misfires badly leading to all sorts of nasty experiences.

Hyperacusis is just one end outcome of ending up with a disabling chronic disease affecting your brain, directed by the immune system, for which the UK NHS currently places responsibility on the patient to 'recover' with no actual treatment protocol in place other than fraud (CBT./GET to change 'beliefs' in ME being an organic disease).

Hopefully in the next few years though, this will change with re-classification and better recognition.

"Many of the participants with CFS do have associated Migraine headaches and they complain of severe light and sound sensitivity. We are analysing those group of people and decision have to be made as to which medications would work at best, thus providing immediate relief from headache."​

There's the brain scans that have shown white patches on the brain in the area related to noise light etc. Consistent with chronic inflammation. Ron Davis may not have written the required article but he is very good at keeping his own sons door shut. I think they have a notice on it. Maybe you could make one. When I still lived with my children I found the need for peace and space constant and overwhelming and at the same time felt so guilty about it. My mother has the radio on all the time and it amazes me that she can bear it. I only want to listen to the birds. It's a shit illness.

High glutamate levels shift the central nervous system towards seizure, and indeed, researchers have known for over 50 years that directly applying glutamate to the central nervous system causes seizures. Dr. Paul Cheney has long proposed that a shift towards seizure brought on by overstimulated, overly sensitive neurons explains the ‘wired but tired’ symptoms and sensory overload often experienced in ME/CFS.

“Our neurons (nerve cells) are sensing stimuli and firing when they should not. This causes amplification of sensory input. Light, noise, motion and pain are all magnified. At the beginning of their illness, many patients report feeling exhausted, yet also strangely “wired.” The “wired” feeling is the slight shift towards seizure that occurs as a result of the excitatory neurotoxicity.” From Carol Sieverlings reports

Cheney proposed that overly activated NMDA (glutamate) receptors cause neurons to fire at the slightest stimulation. He suggested people with ME/CFS use Klonopin, Doxepin elixir and magnesium to reduce receptor activation and indeed Klonopin is widely used in ME/CFS.

I haven't been able to read all replies to this thread yet due to brain fog, just wanted to add my understanding so I hope I don't repeat anyone! To me, I think it's about our delicate energy balance. Anything requiring brain processing time is harder when fatigued, because it takes energy for the brain to function. Thus the more fatigued you are, the less energy you have to - read, process spoken language, process light and what you see, process sounds, connect one thought with another...etc.

Our brains are amazing and manage to function in such as cluttered crazy world because we can filter irrelevant aspects of our world out. When I was in uni, they showed us a video where you had to count the amount of balls thrown between a group of people but you couldn't use fingers (had to mentally count) and it included multiple balls thrown at a time. The people who managed to keep counting didn't notice the increasingly crazy things going on around the ball throwing, such as a monkey walking across the screen, because our brains are so impressive at filtering.

Without enough energy to properly nourish the brain, I think we lose our ability to adequately filter the world around us and things get louder, more obtrusive, brighter and more overwhelming. What is normal for most people becomes too much for us. I think normal people might be able to understand a bit better if you remind them of how a hangover feels - lights are brighter and noises are so loud and overwhelming.

I believe that many of our cognitive and sensory issues boil down to lack of proper nourishment for the brain. I'm not sure if there have been studies related to this, but I'm pretty sure there have been studies indicating hypoperfusion (low blood flow) to the brain in CFS patients. Blood provides the energy and nourishment to make our brains function.

There's the brain scans that have shown white patches on the brain in the area related to noise light etc. Consistent with chronic inflammation.

Click to expand...

@Wolfiness I think Jarred Younger talked about this at one point: he developed a method to calculate the temperature of the brain. In PWME he saw that in certain areas of our brain the temperature is higher than normal (you could call this 'brain fever'), and that it's precisely those areas of the brain that are responsible for things like sensory processing, among other things. So this would explain why we are so sensitive to light/sound/etc. (I can't remember where he said it, maybe someone else knows?)

I'm afraid I don't have any recommendations, but I just wanted to say that I felt a great surge of compassion for you. I have suffered from severe noise sensitivity, and I know how horrible it can be. I hope you find a solution!

Show them this thread.
Get a sign for your door - make one "Keep door shut". Always keep it shut even when out of your room, so it's a familiar sight..
Ask for a white noise machine.
Families can get so sick of our medical issues, so it may be easier just to make some new habits to protect your brain.
Good luck. I live alone but that's real hard too!